Ok, so if you follow me on Instagram @alterego_fitness or Facebook then you are aware that today, June 1, 2016 is a life changing day for my family and I. Today is the day that my mom Stephanie will regain her life, her energy, and her happiness. At this very moment we are sitting in the waiting room at Saint Barnabas Hospital while she is undergoing a kidney transplant. Her new kidney is coming from a healthy, energetic, living donor. A donor who is completely selfless and truly an angel; but this donor didn’t appear out of the clear blue, Nancy is my husband’s aunt. I want to share this story because yes, it’s incredible, but also because throughout this experience I have learned so much about organ donations (specifically kidney transplants). My hope is to help raise awareness about kidney disease and spread the message about the importance of organ donation. One selfless person can change the ending to another person’s story….
What do the kidneys do anyway? Every 30 minutes your kidneys filter blood and move it around your body, removing toxins and excess fluids. They help regulate the body’s fluid levels, filter waste and toxins from the blood, release hormones that regulate blood pressure, activate vitamin D to maintain healthy bones, direct production of red blood cells, keep the blood minerals (sodium, phosphorus, potassium) in balance. So yeah, they’re important. The awesome part is that we have two and we can live a long healthy life with just one!
How my moms story started: About 15 years ago my mom went in for a routine check-up, some lab work came back questionable, she went in for more testing, and before we knew it, we found out that she had been born with one strong kidney and one that actually hadn’t developed fully. The underdeveloped kidney wasn’t working. She was diagnosed with the beginning stages of kidney disease. It was something the doctors would monitor; really it wasn’t a big deal or a concern until about 5 years ago. You actually wouldn’t even know that my mom was “sick.” She had energy, wasn’t gaunt, didn’t have symptoms, and hello….have you seen her gorgeous head of hair! However, in more recent years her numbers were dropping, her energy was decreasing, her brain was foggy from all the toxins, and her kidney disease quickly transformed into end stage renal failure. The doctors had anticipated renal failure in her future, so about 3.5 years ago they placed her on the National Organ Donor list. It was time to play the waiting game….keeping her numbers good, changing her medications, starting Peritoneal Dialysis everyday for 8 hours a day to help manually filter her blood, going in for weekly blood work, doctors appointments, and keeping her spirits high until she was high enough on the recipient list and a match from a deceased individual would pop up. Waiting, waiting, waiting…The average wait for a kidney donor is between 5-7 years. We didn’t have the luxury of waiting, so the search began for a living donor!
The search: Well, let’s just say it isn’t as easy as finding a used table on Craigslist. We started with the immediate family getting tested. Step one is being a blood type match. I was not a match, neither was my dad. My brother Jeff was; however, due to medical conditions the surgeons didn’t see him fit to be a donor. We then started spreading the word about our “new project” to friends and family. Before posting ads in the paper or on social media, we wanted to start with our network. After all, it’s not easy asking people to undergo a major surgery and give up a perfectly healthy body part, but we incredibly we had a number of people step forward and offer to get tested. After finding out that many were not a match, we were left with 5 amazing people who were a blood match. The transplant team started further testing with the first match. The first donor went in for testing and was told he wouldn’t be a good match. Then an amazing woman I work with went through hours of physical and psychological tests, but ended up not working out due to my moms blood “not playing nicely” with hers. My mom has always been a little sassy! So, onto the next donor. Mike’s late mother Patty’s sister Nancy… Mike’s aunt, Mike’s godmother, and my new aunt.
A bit about WHY Nancy was so passionate about donating: Nancy has always felt as though she needed to give back because both of her sons Brian and Stephen had health struggles as infants. They were both born with Wiskott-Aldrich syndrome, a rare genetic disorder that causes the body to destroy its own platelets and leads to a host of complications. Both brothers had their spleens removed as infants and are alive today thanks in part to the generosity of bone marrow donors. For Stephen in particular, the need for a transplant had been so acute that the community rallied to his aid, turning out in droves at Canton High School in May 1994 to have their bone marrow tested. While no one locally proved to be a match, Stephen’s angel would later appear in the form of an unidentified 52-year-old man from Racine, Wisconsin; a man that the family eventually had the good fortune of meeting. For 20+ years Nancy has felt she was never truly able to give back or thank anyone enough for the incredible people who saved her boys lives. Although Aunt Nancy hadn’t even met my parents yet, this was her chance!
What happened next: Well, Nancy decided right away this was something she wanted to do. She began doing her homework, researching about the transplant, what would go into it, how would recovery be, what the risks were, and then she asked her husband Jim’s opinion and he was more than supportive. So, before testing would begin she needed to meet my mom. Nancy and Jim came down to New Jersey from Massachusetts for a dinner and official meeting. They hit it off immediately and we all just “felt it.” Once they got back to MA the tests began (don’t forget, we had been down that road a few times already and each time we had failed). Basically it looked like this: Step 1, blood type…she was a match! Step 2, total body exam…she passed with flying colors. Step 3, mix her blood with my moms and see how they do together…success! Step 4, ship Nancy off to NJ for a week of testing at Saint Barnabas (psychological tests, meeting with social workers, talking to the transplant team, CT Scans, the works)… check that off the list! At this point we had about 4.5 months of testing behind us.
Then we would all take a breather, pack the dialysis machine, all my mom’s equipment, and head to Mexico for our wedding. Riviera Maya was just what the doctor ordered! We all had time to relax and reflect and what a true gift having our two families come together really was. Related by marriage and soon enough after returning to be related by blood. Surgery was scheduled and our lives were about to change.
The surgery: So yes, transplants are scary and major surgery is always a risk; but, yesterday we sat for 4 hours speaking with the team of doctors and social workers. They laid everything out for us, drew pictures, and explained every last detail. Everything suddenly didn’t seem so scary. One of the most fascinating things to me was that Nancy’s remaining kidney would grow in size and almost double by day 5 post-op. Her one kidney will then take on the responsibility of the missing kidney and will function as both for the rest of her life. While my mom’s recovery is more intense and involved, they will both be eating breakfast together tomorrow morning!
I absolutely loved one thing that the lead doctor kept saying, “I’m not going to tell you what you can’t do. My understanding is that you’re having this transplant to get your life back, not for me to take it away.” I sat in the meeting vigorously writing notes like I was sitting in one of my anatomy classes back in college. My months of built up anxiety started to lift and my gratitude started taking over. We were literally being gifted life to my mom by my new aunt. We are so blessed. We got to the hospital early in the morning and both my mom and Nancy were in great spirits. The head nurse….her name is Patty :0) We should hear shortly how they’re doing and before you know it we will be visiting them in recovery.
Some facts about Kidney Disease and the Organ Transplant list:
- You have 2 kidneys, but you only need 1
- 26 million Americans have Kidney Disease (most don’t even know it!)
- Kidney Disease is the 9th leading cause of death in America
- Every year, Kidney Disease kills more people than Breast or Prostate Cancer
- Once a kidney fails, dialysis or a transplant are required
- More than 661,000 Americans have kidney failure; of these individuals 468,000 are on dialysis, and approximately 193,000 live with a functioning kidney after transplantation
- Everyday 13 people die waiting for a kidney
- Of the 120,000 people waiting for an organ transplant (any organ)
- 100,102 of those individuals await a kidney!!! (as of 4/25/16)
- Fewer than 17,000 receive a kidney each year
Like I mentioned earlier, through this experience I want to help raise awareness and educate others on the importance of organ donation. I want to share our story, give others in need some hope, thank everyone in our lives for all their help, support, and love. I can not even express my gratitude and overwhelming feelings of love. Lastly, to Saint Barnabas Medical Center in Livingston, New Jersey; thank you for your incredible staff and support team.
xoxo, Jess #shareyourspare